Well, it’s been one year since I had the surgery that drastically changed my life. Recovery has been an absolute roller coaster to say the least; every up has had a down, every twist has had a turn, and every bit of “full-speed” progress has required a brake. There have been times where I felt like I was riding the roller coaster blindfolded and without a safety harness. However, for every moment of fear and unpredictability, there’s been more moments of pure, unadulterated fun and liberation. Not to mention, I always had someone sitting next to me holding my hand.
The first few months post-surgery were the climb to the top. Progress was slow and not without the odd setback, but I felt like I was invincible. I was leaving the house, going outside more, celebrating milestones with friends and family, and taking on more responsibilities. Most notably, I moved out with Jon and hosted the TN Awareness Event. I also started to see a shift in my mindset. My desires and aspirations came back, I started having hope for my future, and I began to feel more confident and satisfied.
Winter was the inevitable drop. I experienced my first hospital trip since having surgery. I was proud of myself for making it 4 1/2 months without an infusion, but pride didn’t make it hurt any less. Every call for help and need for medication stirred up old trauma and a hesitancy to move forward. As if the ever-lingering fear of full reoccurrence wasn’t enough, I started to fear that my actions would speed up the process. My invincibility cloak blew off in the wind and I realized that I needed to start being more deliberate in my actions. No longer would I constantly push the envelope and do anything and everything – I needed to pace myself and remind myself that I’m still recovering.
The beginning of 2020 was full of loops, twists, and turns. I had two more hospital trips and both of them impacted my mental health immensely; I was scared that my relief was coming to an end. In February, I turned 22. While 22 isn’t typically a milestone birthday, it felt incredibly important because there were many times in 2019 that I didn’t think I was going to survive the year. I simply felt grateful to be alive.
In March, Covid-19 struck North America and the rollercoaster completely derailed. At first, my life didn’t feel very different. Chronic illness is extremely isolating and unpredictable in itself, so I was used to having my plans canceled and not being able to see my friends on a regular basis. Although I’ve never wanted anyone else to experience those things, it was exciting to think that people may come out of this experience with more empathy for the chronically ill/disabled. In a way, life actually improved for me. With everyone at home, I finally felt equal. The “normal” societal expectations of productivity had to be thrown away and redefined. Technological advances in communication made human connection more accessible to me. Through Zoom, House Party, and FaceTime, I actually talked to my friends and family more than I do on a regular basis. Of course, there were downsides, though. Being more susceptible to serious illness is terrifying. It makes you scared to go anywhere, even if the “anywhere” is to receive critical care pertaining to your underlying health conditions. I couldn’t choose to avoid medical facilities because of my port. I had to get it flushed every month. As for other less-essential appointments, having to manage your health and medications over the phone compromises the level of care you get, no matter how good your doctors are. I wasn’t able to speak to my actual neurologist at a 3 month checkup. Although the neurologist I spoke to on the phone was great, blindly trusting a doctor I’ve never met before to change medications is pretty scary, especially when med errors have seriously harmed me in the past. The hardest part, though? Masks fucking hurt when you have TN.
As of today, I feel like I’m starting to get back on track. The other day, I used an analogy where I likened TN to a massive tidal wave. With every wave, there’s smaller ripples that branch off and carry on. As you can imagine, 7 years worth of pain, medications, and procedures have caused quite a few ripples. Despite having less face pain, my body is still struggling. I’ve been pretty quiet about it because I still fear the people that will say, “does it ever end with her?” I know I shouldn’t give value to those people’s words, but it still impacts me every time. However, regardless of how open I’ve been about my struggles, I’ve been working hard to sort them out. I was finally honest with my family doctor and I’m currently getting the testing that I need out of the way. If I’m being honest, I sometimes fear that by the time I deal with all these secondary problems, my TN will be back with a vengeance. Nevertheless, it’s better to deal with them now and get my body and mind to a stronger, healthier place. I want to be in premium ass-kicking shape by the time the monster gets stronger.
Recovery has been one hell of a ride, but I’d do it over and over again. Moving forward, there’s lots to be hopeful for. If all continues to go well, I may be able to start lowering some medication at the end of this month. Doing that could either go really well or really badly, but at the very least it gives me hope. Hope that I can enrol in online schooling again, start driving more, and in general, be less fatigued and distant. Hope that some of my secondary problems will disappear without medical intervention. Hope that my port can be removed for a long time. Hope that my future has more stability in store.
Most importantly, I want to send a huge thank you to everyone that’s been on this rollercoaster with me; I truly couldn’t have done it without you. Whether it was babysitting me, sending cards and gifts, bringing dinner, Iced Capp deliveries, volunteering at the TN event, helping me move out, stopping by for a visit, or simply sending an “I’m thinking of you” message, it kept me strong and fighting. I’m constantly amazed and grateful for my support system.
Love and Gentle Hugs,
Please Enjoy Some Pictures From This Year
In The Recovery Room After Surgery
Mom Took Me To The Calgary Zoo The Week After Surgery
I Celebrated My 6th Year With TN On July 13th, 2019
Mom And I Took A Trip To Waterton In July
My First Big Hike 3 Weeks After Surgery
Mom, Grandma, And I Went On A Day Trip To The Hoodoos
We Went To Bre And Lauren’s Beautiful Wedding
Mom And I Were Interviewed For The News At The TN Event
Hunter’s Lacrosse Team Gave Me A Signed Jersey At The TN Event
I Voted In The Federal Election
My First Hospital Trip Post-Surgery
The Lacrosse Team Did A Blood Drive
We Made A TN Float For The Santa Claus Parade
Christmas With My Boys
New Year’s Eve Was Spent With My Lacrosse Family
I Celebrated My 22nd Birthday With Some Amazing Friends
My Most Recent Hospital Trip
Hunter’s Socially Distanced 18th Birthday
Mom And I At Hunter’s Birthday
Hunter’s Grad Gala Was Celebrated At Home
Family Photos For Hunter’s Grad
And Lastly, Getting Cardiac Testing Done!